Accommodating diagnosis-avoidant autistic family member

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What did it take for you to pursue an official diagnosis? I have ADHD myself. I loved the diagnosis because it was a title that helped me to holistically define healthy expectations and accommodations for myself. I could sit here and talk about the behavior about my family member and things I've noticed over the years, the measures I've taken to help, but I'm at a point now where I want to see them accommodating themselves and becoming independent. I want to understand the autistic POV on this. Currently, they're a co-dependent adult. I also know that there's a high degree of correlation between autism and familial abuse, and I know they've gone through a lot, but I'm struggling to find where the line ends as far as helping someone who has built their walls pretty high and shuts down whenever I offer to walk through their problems with them. I feel invisible and unappreciated sometimes.

That sounds pretty frustrating and exhausting. As far as their perspective, considering they've gone through a lot, perhaps they're unaware that you're offering help, what is expected of them, or that you're a reliable support. They could also confuse someone offering help with sabotage if their family was that toxic.

What kind of support do you offer, and how do they respond to it?

Also, thank you on their behalf!

Edit: Thank you for the thank you on her behalf.

Everything from systems in the home to individualized resources. She lives with me and her sister (my wife). The common denominator is to hold space for autonomy and stability, but here are a few things.

• Cleaning system for the house, but she ignores that and contributes in her own way.

• Food system for the groceries, but she doesn't use it and tries to blame me when something is missing that she wants. She also tried to mirror that with putting a sign up for me to remember recycling that no one uses.

• Availability to help with job searches and revising resumes, but she never asks for help. She claims that she always asks for help, but she literally doesn't.

• A life map for her birthday which was a database full of tips and resources to help her navigate through her life based on Mazlow's Hierarchy of needs, but she's never mentioned anything about it since her birthday. Everything from a grocery system, food assistance programs, job searching, renting, home ownership, people she can talk to, ND reward systems (had to tread lightly with that one), and even some career planning tips for her venture. I also shared a task management system that I made for myself to help her prioritize her day.

It's even small things, too. I get fatigued in this relationship, and I seek margin, or time and space away from her, daily. The way I've described it to others is that I function as a bridge. If she's on the wrong planet, I'm the translator that tries to help her navigate life while she's here... even though she never asked for that. Compliments I say are usually mirrored back at me and it feels disingenuous. Conversations must revolve around her interests, or else she won't really talk. When the roles are reversed, I get unsolicited advice or inappropriate comments. I've heard this described as an autistic thing, but I can't socially coach her about modifying her script when she doesn't even want the help.

Last thing is pretty nuanced, so I'll use my words carefully. This could be a trigger warning for some. The closest thing that I've found to describe it is disinhibition via provocation. Teasing, mocking or making fun of her (like a loving sibling would, but rather aggressively) is like a social key to unlock vulnerability with her. It's definitely got me outside of my comfort zone, but it almost feels wrong to say that it works. To me, it's backwards. Her guard goes down instantly and she becomes more playful and expressive. I wager it's a defense mechanism she doesn't know she's using, and her sister agrees.

That sounds extremely difficult & frustrating for you. I'm assumimg she's your sister-in-law & if so you might need to have a conversation with your wife about this. You should not be expected to be a caretaker for an adult just because you married her sister. Perhaps your wife would agree to try getting her into some kind of group home or at least help with setting firm boundaries. It's important to explain to your wife how this is negatively affecting your mental health.

Ahhhh, I can see how that would be frustrating. It's impressive you're still looking for ways to help! Here are ideas that I thought of while reading the description.

That seems a bit antagonistic. It's like she insists on not accepting your help or following systems that you provide. That could be (a) pathological demand avoidance (PDA) or (b) that her familial upbringing resulted in an unhealthy social model and you unconsciously represent someone else from her past.

For the PDA route, look up some videos on YouTube about it. I think that the root issue is that people with PDA have a strong fear of losing personal control. In that case, if their need for personal control is met, then things workout. There should be helpful tips on how to work with PDA. I can be PDA myself and didn't even know it. Once I realized that was me, I accepted that sometimes my behaviors are about losing control. That allowed me to consider whether not wanting to listen to someone was out of some valid reason that I needed to insist on or me overreacting. I think people with PDA may also prefer to choose to do things they see others do and have beneficial outcomes. In this case, imposing a system can result in rebellion. Instead, having them see a person model behavior and things workout for them would encourage the to choose to behave the same.

However, since she seems to warm up when teased, that could be a sign of an unhealthy social model. The teasing feels comfortable and she knows how to navigate that because that's how she learned to socialize. Being helpful and caring could either just be weird to her and that makes her uncomfortable/vulnerable, or someone in her past that was helpful and caring was actually being deceptive or controlling, so that's what she unconsciously is playing out. If it's discomfort with people being helpful and supportive, she may not know how to function in that environment. She just doesn't know what to do because she doesn't have the instruction manual.

In the case that you represent someone, she might need to learn that whatever she fears will happen is not going to happen, so you aren't an adversary or danger. Instead, you guys are part of the same team and working together. Resolving that alone might lead to impressive improvements though. Not just with your relationship, but with all of the consequences that spread out because of it. For example, if she sees you as danger, then a lot of her mental energy is going to being alert. When she no longer sees that as necessary, her attention would be freed up and could be applied elsewhere. I think that would be awesome! If it's a combination of both of these, then she could be completely confused. She's in an uncomfortable environment that she doesn't understand and possibly in danger. Learning a whole new social model and that you're not danger at the same time can be too much for her to integrate in one hit. Think about it. She would almost be learning to function as a new person. Perhaps going back to very small basic behavioral baby steps would be better. Instead of expecting her to follow a whole new system and accept you as safe, maybe request very small gestures and appreciate those, slowly building on them with time so that she can rebuild a whole new model while learning you are safe. Once she learns to trust you, I think you'll see some wild improvements.

Beware: I'm no expert on this

I'll add that it might be worth a try to majorly step back from trying to help her but set some firm boundaries for majorly problematic behaviour. Your wearing yourself out trying to help & your help is being interpreted as confrontation.

^ That could be part of it.

Okay, I went swimming and got real into this topic. I put myself in her shoes and this is what would be going on if I were her. Here we go with autism unleashed.

Another thing I thought of is that being autistic, they may not understand the entire thing as a whole like NTs do. What they see is each detail until they understand the whole thing after each detail is individually understood. So going in with a full model can be too much for her, and she doesn't get it. She might need to understand each part of the model in steps before jumping right into a full system. Otherwise, if something goes wrong, she wont know where and the baby bathwater happens.

Also, for me, learning is a process of repetition until it becomes a feeling. Otherwise, it's a consciously thought out process and processor threads are very limited. So, I learn by repeating a behavior over and over until it becomes an automatic feeling that is activated rather than thinking it every time. Creating an entire system without explanation is possibly overwhelming her capacity, which causes a feeling that they may interpret at adversarial and enact a behavior script of responding to fear or threat. This would be especially so if they have experienced toxic people in the past that were overwhelming. Therefore, overwhelming means threatening person which enacts that script. Here is a flowchart:

Helpful person creates autism friendly system for regular house upkeep excited to help autistic person and give them something they've never had. They're excited for it!
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Autistic person starts using system with suspicion since new models provided by others have failed spectacularly before. Processor capacity is at 30% adapting to new model and 10% on managing suspicion, 10% worried about control. Total = 50%, so they look fine.
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Days later, autistic person starts placing effort to reduce need for suspicion and worry because it seems fine. Processor is at 25% new model, 7.5% suspicion, 7.5% worry, 20% accommodating (memorizing model, reducing need for suspicion and worry). Total = 60%. They look like things are improving, but their processor actually has lower reserves.
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Something irrelevant happens (loud noises or rude person at the store earlier that day). Autistic person is now 25% new model, 7.5% suspicion, 7.5% worry, 20% accommodating, 30% sensory overload/mad at rude person. Total = 90% Time to run an application from the processor-use-reduction category. Unfortunately, it also takes up processor capacity.
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Autistic person is engaged in special interest at max allowable capacity to recover: 30% new model, 7.5% suspicion, 7.5% worry, 20% accommodation, 30% sensory/mad, 9% special interest. Total = 99%. This is dangerous.
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Helpful person does something small to help because NT is trying to show they are helpful and caring and autism-loving because it's working. Let's goooo! (NT suggests a correction, gives helpful advice, asks what they want for dinner, seriously just giving love, etc., but it interrupts). This adds 5% to processor, pushing it over capacity. 104%. Chernobyl is happening.
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Autistic person recognizes processor is over capacity and there is no processor left to even analyze why, let alone plan to resolve calmly. Enact over-capacity safety procedures before a true meltdown happens!! go! go! go! Shut down all processes except for safety procedures. In their experience, it's protect themselves from others until things recover and they can rationally analyze things. Their experience is, "I'm overwhelmed and it's because of at least one of these things in the processor." What this looks like is, "Nothing is working, so I'm not doing anything."
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Helpful NT person feels confused, dismissed, rejected, unappreciated, and slightly defeated (I'm guessing! Sorry if I'm wrong). Autistic person reset suspicion meter.

If my model is correct (I'm wrong a lot!), then maybe consider helping them reduce their load.

Control load
Perhaps see if they can find a space in which they feel they have control so they get that need met and reduce that worry. I'm currently playing a video game where I get that.

Suspicion and New Model load
Rather than giving them advice and corrections, you can have your spouse give you the advice or corrections while they are around a few times, and you can do the same with your spouse later. I would recommend that your spouse give the first advice. Also, you and your spouse could ask each other for help and reciprocate each other a few times so she sees that. Later, ask the autistic sister for help. She may reciprocate later and ask you how to work with the model. Maybe have some sort of process for suggesting changes to the model. Eventually, you can create a social system of collaboration and respect.

Sensory & Interruptions
Maybe be aware of how their day went or look for their normal cues/behaviors that show they're overwhelmed. If they are, then accept it and allow for recovery however you guys work that out. Also, try to limit interruptions if they're highly engaged in something. Interruptions is like wiping the RAM/working memory. Anything that was not committed to the hard drive was lost and the whole thing needs to be reloaded again from the last save. It's not your responsibility to baby them and prevent interruptions, but maybe be extra considerate about that particular thing with them like you would be with a friend that has their own particular sensitivity to something.

Shutdowns
Maybe take this as a sign of respect and care because they are shutting down to prevent things from getting even worse. I know that for me, I don't think they're awesome and that people think I'm mysterious or whatever. They're kind of embarrassing and throws off my entire routine and plans for days. But they're necessary or we can have meltdowns which could be much worse. A shutdown is a sign that they are overwhelmed and confused, so they're taking a hit to prevent things from getting worse. Once they start coming out of it, consider doings things that would help reduce embarrassment. I think it would demonstrate acceptance and appreciation.

Bonus!
Explaining things helps me a lot. If she does something that upsets you, talk to her about it rather than getting upset and reacting. She may have no idea why you're reacting, so what she will learn is that something in the last ~1-2 days upset you. She may stop doing all of those things, stop doing something else and continue doing the thing that upset you, or just think you are unpredictable and avoid you. Also, remember that we're not good with implied messages, so it may need to be more direct than with most other people sometimes.

Bonus! Part II
Maybe she doesn't know how you feel about the whole thing. If someone were making all this effort with me and told me that's how they felt, I would feel terrible. Depending on her character, if you communicated that to her, it may cause a major change. Remember, the whole thing (forest) is lost on us a lot. Saying how you felt would put it into perspective.

Hope this helps! If I'm way off, then don't worry. It helped me lol